2076
Treatment Decisions for Breast Carcinoma
Patient Preferences and Physician Perceptions
Eduardo Bruera, M.D.1
Jie S. Willey, M.S.N.1
J. Lynn Palmer, Ph.D.1
Marguerite Rosales, M.D.2
1
Department of Palliative and Rehabilitation Med-
icine, The University of Texas M. D. Anderson
Cancer Center, Houston, Texas.
2
Department of Breast Medical Oncology, The
University of Texas M. D. Anderson Cancer Center,
Houston, Texas.
Presented in part as a poster at the American
Society of Clinical Oncology 37th Annual Meeting,
San Francisco, California, May, 12–15, 2001.
Address for reprints: Eduardo Bruera, M.D., De-
partment of Palliative Medicine, Box 8, The Uni-
versity of Texas M. D. Anderson Cancer Center,
1515 Holcombe Boulevard, Houston, TX 77030;
Fax:(713)792-6092;E-mail:ebruera@mdanderson.
org
Received August 13, 2001; revision received Oc-
tober 17, 2001; accepted December 3, 2001.
© 2002 American Cancer Society
BACKGROUND. Patient autonomy and participation in treatment decision making
have been encouraged in recent years. However, patients and physicians fre-
quently disagree with regard to the patient’s needs and perceptions of their illness.
To the authors’ knowledge to date only limited research has assessed physicians’
perceptions of patients’ decision-making preferences. The purpose of the current
prospective study was to determine the agreement between patient decision-
making preferences and physician perceptions of those preferences.
METHODS. Women with breast carcinoma who were attending their first outpatient
consultation with a breast medical oncologist in a university cancer center were
enrolled in the current study. At the end of the consultation, the patients were
given a survey regarding their treatment decision-making preferences that in-
cluded active, shared, and passive roles in decision-making and the patients’
attending physicians also were given a survey regarding their perceptions of the
patients’ decision-making preferences.
RESULTS. Fifty-seven patients had complete data and were analyzed. Approxi-
mately 89% of these 57 patients preferred either an active or a shared role in
decision making. The agreement between patients and physicians with regard to
decision-making preference only occurred in 24 cases (42%). The majority of
covariates such as age, education, and income were not found to be statistically
significant with regard to patient preferences or to the proportion of patients and
physicians who agreed on the patient’s preferences.
CONCLUSIONS. Women with breast carcinoma appear to have a strong desire for
involvement in making decisions regarding their treatment. However, physicians
do not appear to be consistently able to predict the decision-making preferences of
their patients. Enhanced agreement between patient preferences and physician
expectations mostly likely will improve communication and patient satisfaction
with the treatment decision-making process. Cancer 2002;94:2076 – 80.
© 2002 American Cancer Society.
DOI 10.1002/cncr.10393
KEYWORDS: cancer patients, decision-making preference, physicians’ perceptions,
agreement association.
A lthough health care professionals have encouraged patient auton-
omy and participation in treatment decision-making in recent
years, how actively patients want to participate in making decisions
concerning their cancer treatment remains controversial.1–10 More-
over, patients and physicians frequently disagree with regard to what
the patients’ needs and perceptions of their illness are.11 Several
studies regarding patient decision-making preferences have been
conducted,5,8 –14 but to our knowledge only limited research has as-
sessed physicians’ perceptions of patients’ decision-making prefer-
ences.

If health care professionals are aware of patients’
preferences for making treatment decisions, better
and more effective communication may be estab-
lished between patients and physicians. The objec-
tives of the current study were to test the agreement
between patients’ decision-making preferences and
physicians’ perceptions of those preferences and to
determine how patient preferrences and agreement
were associated with patient characteristics such as
prior cancer treatment, income, and age.
MATERIALS AND METHODS
Patients
Women were eligible for the current study if they were
attending their first outpatient consultation with a
breast medical oncologist at The University of Texas
M. D. Anderson Cancer Center, were age ⱖ 18 years,
had pathologically confirmed breast carcinoma, pre-
sented with a normal cognitive status, and could com-
municate in English. A total of 60 women were in-
cluded in the current study, although 3 patients were
not included in analyses because they did not answer
the question regarding their decision-making prefer-
ence.
Study Procedure
The current prospective study was conducted at the
Breast Center Outpatient Clinic between April 2000
and September 2000. The protocol was approved by
the institutional review board. All patients registered
in the study were required to provide written informed
consent.
When a potentially eligible patient was identified
by the research nurse, the study was explained to the
patient. The attending physician was informed and
asked to provide verbal consent for the patient’s par-
ticipation and for his or her own participation in the
study. At the end of the consultation, the patient and
the attending physician each were given a survey re-
garding the patient’s decision-making preferences re-
garding treatment. The surveys were based on a pre-
viously developed tool.3,14
Patients were asked to choose from among the
following decision-making preferences regarding their
treatment plan:
1. I would prefer to make the treatment decision on
my own.
2. I would prefer to make the decision by myself after
hearing my doctor’s opinion or input.
3. I would prefer to make the decision together with
my doctor.
4. I would prefer that my doctor make the decision
after talking with me and hearing my opinion.
Decision-Making Preferences/Bruera et al. 2077
5. I would prefer that my doctor make the decision on
his or her own.
6. I don’t know.
7. I prefer not to answer.
Physicians were asked to choose from among the
following in assessing a patient’s preferences:
1. I think the patient prefers to make the treatment
decision on her own.
2. I think the patient prefers to make the treatment
decision after hearing the physician’s opinion or
input.
3. I think the patient prefers to make the treatment
decision together with the physician.
4. I think the patient prefers that the physician make
the treatment decision after talking with and hear-
ing the patient’s opinion.
5. I think the patient prefers the physician to make the
decision on his or her own.
6. I don’t know.
7. I prefer not to answer.
The potential roles for the patients in making
treatment decisions were an active role (Answers 1
and 2), a shared role (Answer 3), or a passive role
(Answers 4 and 5). Instances in which either the pa-
tient or the attending physician chose “I don’t know”
or “I prefer not to answer” were not included in anal-
yses.
Data were collected by the research nurse who
had considerable experience in caring for women with
breast carcinoma. In addition to the patient and phy-
sician surveys, information concerning the patient’s
age, ethnicity, educational level, occupation, marital
status, household income, current stage of breast car-
cinoma, time since diagnosis of breast carcinoma, and
prior treatment for breast carcinoma was collected
through interviews with the patient and review of the
patient’s chart.
Statistical Analysis
A total of 57 patients were included in the analyses.
Categoric data such as agreement scores and patient
decision-making preferences versus demographic
variables were analyzed using chi-square tests. The
mean ages of the three patient groups (active role,
shared role, and passive role) were compared using
analysis of variance; the data were approximately nor-
mally distributed. Kappa coefficients (␬) for agreement
were calculated. A weighted ␬ coefficient was calcu-
lated from the results of the original preferences (An-
swers 1–5); a weighted ␬ coefficient also was calcu-
lated on the three regrouped categories (active,
shared, and passive roles).
2078 CANCER April 1, 2002 / Volume 94 / Number 7

TABLE 1 ing in 13 cases (23%), a shared role in 38 cases (67%),

Patient Demographics (n ⴝ 57) and a passive role in 6 cases (11%), whereas physicians
estimated patients’ preferences as an active role in 19
Characteristics No. of patients (%)
cases (33%), a shared role in 27 cases (47%), and a
Age (yrs) ⱕ 50 24 (42) passive role in 11 cases (19%).
⬎ 50 33 (58) Table 2 shows the agreement between patients
Race/ethnicity and physicians. The agreement (in terms of active,
Black 1 (2)
shared, and passive role categories) was observed in
White 51 (89)
Asian 2 (4) only 24 of 57 cases (42%). The weighted ␬ coefficient
Hispanic 3 (5) for Table 2 was low (0.07), and remained low for the
Educational level three regrouped categories (␬ coefficient ⫽ 0.08). The
⬍ 12th grade 2 (4) upper 95% confidence intervals for these ␬ coefficients
High school graduate 18 (32)
were 0.26 and 0.27, respectively.
ⱖ College 37 (65)
Employment None of the following covariates were found to be
Employed 41 (72) related siginificantly to patient preferences or to the
Unemployed 16 (28) agreement between patients and physicians: age, ed-
Marital status ucation, income, race, employment status, marital sta-
Married 40 (70)
tus, current stage of disease, or time since diagnosis.
Not married 17 (30)
House Income However, patients who had received prior treatment
⬍ $50,000 22 (39) were more likely to prefer a shared role and less likely
ⱖ $50,000 28 (49) to prefer a passive role in decision making compared
Declined to answer 7 (12) with those patients who had received no prior treat-
Current stage of disease
ment (chi-square test ⫽ 16.6; P ⫽ 0.0003) (Table 3).
Locoregional 35 (61)
Metastatic 22 (39) The proportion of agreement between patients and
Time since diagnosis (mos) physicians for patients with or without prior treatment
ⱕ2 29 (51) was not significant. The proportions of agreement be-
⬎2 28 (49) tween patients and physicians differed somewhat be-
Prior treatment
tween the categories of income (P ⫽ 0.10) and age (P
No treatment 14 (25)
Any treatment 43 (75) ⫽ 0.12); patients with a higher income and patients
who were younger in age were more likely to be in
agreement with their physicians. Finally, although not
RESULTS a statistically significant finding (P ⫽ 0.35), patients
A total of 132 patients were identified through the who preferred to play a more passive role in the deci-
screening process. Sixty patients were not eligible for sion-making process tended to be older than patients
the study, among them 27 patients who did not speak in the active or shared role categories (mean age in the
English, 7 who had no pathologic confirmation of active group, 52 years; mean age in the shared group,
breast carcinoma, 1 who had a history of severe anx- 54 years; and mean age in the passive group, 60 years).
iety, 16 who previously had been treated at the M. D.
Anderson Cancer Center, and 9 who did not provide DISCUSSION
consent because of time constraints. Twelve patients The two main findings in the current study were that
declined to participate in the study. Among the 60 the majority of women with breast carcinoma pre-
patients enrolled in the current study, 3 patients who ferred to make decisions regarding treatment of their
chose the answers “I don’t know” or “I prefer not to breast carcinoma together with their physicians, and
answer” in the survey were not included in analyses. that there was poor agreement between the decision-
Table 1 shows patient demographics. Thirty-three making preferences of the patients and the physicians’
of 57 patients (58%) were age ⱖ 50 years. Thirty-seven perceptions of these preferences.
patients (65%) had an educational level of some col- Women in the current study demonstrated a
lege or completed college or higher, 40 patients (70%) strong desire to be involved in making decisions re-
were married, 28 of the 50 patients who answered the garding their breast carcinoma treatment; 89% of
income question (56%) had a household income of at women preferred to play either an active or a shared
ⱕ $50,000, 41 patients (72%) were employed, 43 pa- decision-making role. In contrast, an earlier study of
tients (75%) had received prior cancer treatment, and newly diagnosed breast carcinoma patients found that
51 patients (89%) were non-Hispanic white. 52% of patients preferred to play a passive role in
Patients preferred an active role in decision mak- treatment-decision making.10 The current study find-
 Decision-Making Preferences/Bruera et al. 2079

TABLE 2
Agreement between Patient Decision-Making Preferences and Physician Perceptions of Patient Preferences

Physician perception

Patient Active Active Shared Passive Passive Total

preference 1 2 3 4 5 (%)

Active 1 0 0 0 0 0 0
Active 2 0 5 6 2 0 13
Shared 3 0 14 17 6 1 38
Passive 4 0 0 4 1 0 5
Passive 5 0 0 0 1 0 1
Total (%) 0 19 27 10 1 57

1: patient alone; 2: patient after hearing the physician’s decision; 3: patient and physician; 4: physician after talking to patient; 5: physician alone.

TABLE 3
Covariates of Patient Preferences and Patient/Physician Agreement

Covariates

Prior treatment Incomea Age (yrs)

Patient preference No Yes < $50,000 > $50,000 < 50 > 50

Active 5 8 6 6 7 6
Shared 4 34 14 20 16 22
Passive 5 1 2 2 1 5
Proportion of agreement
between patient and
physician 5/14 (36%) 19/43 (44%) 6/22 (27%) 14/28 (50%) 13/24 (54%) 11/33 (33%)

ing is in contrast with a recent study of patients with decisions for them, which supported the current study
chronic disease (hypertension, diabetes, myocardial findings. These findings suggest that women with
infarction, congestive heart failure, and depression) breast carcinoma want a substantial degree of involve-
that reported that 69% of patients preferred to leave ment in making decisions regarding their medical
their medical decisions to their physicians.8 The find- treatment and that patients with cancer may want
ings of the current study also are in constrast with an more involvement than patients with other condi-
early study conducted by Degner and Sloan3 that tions. In the current study, agreement between pa-
found that 59% of newly diagnosed cancer patients tients and physicians with respect to the patients’
preferred their physicians make their treatment deci- decision-making preferences occurred only in 24 of 57
sions for them. Similarly, Sutherland et al.4 reported cases (42%) and the ␬ agreement coefficient was low (␬
that 63% of cancer patients in their study preferred to ⫽ 0.08). In general, the physicians underestimated the
play a passive role in treatment decision-making. patients’ preferences for playing a shared role in the
However, the findings of the current study were con- decision-making process. A recent study by Bruera et
sistent with those from a study of treatment decision- al.14 of palliative care patients who were assessed by a
making preferences conducted in 35 women with symptom control and a palliative care specialist found
Stage I and Stage II breast carcinoma, in which 23% of similar results; of 78 cases, 30 (38%) demonstrated
patients preferred to play an active role in the deci- agreement between the patients and the physicians in
sion-making process, 57% preferred to play a shared terms of whether patient preferences were observed.
role, and 20% preferred to play a passive role.6 In a However, the patients in the current study appeared
more recent study, Degner et al.5 found that 22% of to be less passive in their decision making compared
women with breast carcinoma wanted to select their with the palliative care patients. Six of 57 patients in
own medical treatment, 44% wanted to select their the current study (11%) preferred to engage in passive
treatment in collaboration with their physicians, and decision making, compared with 13 of 78 patients in
34% wanted their physicians to make their treatment the earlier study(17%). Possible reasons for this dis-
2080 CANCER April 1, 2002 / Volume 94 / Number 7
parity include differences in the patient populations
and a response shift over time.15 As patients become
more debilitated they may choose to play a more
passive role in decision making. This finding should
be evaluated in future studies.
Other factors that may influence patients’ deci-
sion-making preferences include age and education.
Previous studies have suggested that patients who
prefer to play a more active role in decision-making
are younger1–3,8,16 –17 and more highly educated than
those patients who prefer a shared or passive
role.1,3,6,8,17–19 However, in the current study, the ma-
jority of the covariates tested were not found to be
statistically significantly related to patients’ decision–
making preferences, a finding that may result in part
from the homogenity of the patients with regard to
these covariates. The small sample size is a limitation
of the current study. This also may contribute to the
lack of effect of patient characteristics on decision-
making preference.
The findings of the current study suggest that
options that are likely to be unrealistic such as the first
option (none of the 57 patients in the current study
and only 1 of 78 patients in our previous study14)
rarely are chosen by patients. This finding most likely
suggests that an acceptable level of autonomy is in-
terpreted by the majority of patients as being a joint
decision rather than a completely independent deci-
sion-making process.
The approach we used to determine patient pref-
erences has the advantage of being quick and easy to
use in a clinical setting. However, this tool may over-
simplify the situation and does not provide important
background information with regard to why an indi-
vidual patient has made a particular choice.20,21 More
research is needed to better characterize the complex
factors that influence decision-making preferences.
Conclusions
Women with breast carcinoma appear to have a strong
desire for involvement in making decisions regarding
their treatment. However, physicians frequently are
unable to predict patients’ decision-making prefer-
ences. When physicians’ awareness of patients’ pref-
erences and expectations is increased, communica-
tion between patients and physicians will improve and
patient satisfaction with treatment decisions will be
enhanced.
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